Long Overdue Update

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(click here to watch a blurry video with quite the wonderful musical production with a recorder. This video shows Emma using her left hand with a drum)

While it feels like it has been years since we have updated the site, it is good to see that it has only been just over a month. What an event filled month it has been. I used to think that our lives were busy before but I guess you just find things to fill your time with. This past month has been filled with finishing painting our house, getting ready for the school year, and deciding the medical plan for Emma in the upcoming months. I will let you guys guess which of those three were the least painful. On a positive note Emma has uttered her first DADADADADA which melted my heart and she has learned the skill of getting from laying on the floor to sitting up by herself. These were both huge days for our family.
I am sad to inform everyone that this post is being written in the wonderful confines of Children’s Hospital in Omaha. I will go back a little bit to make sure everyone knows what is going on. Kathryn and I along with the Oncology doctors in Omaha and Boston finally made a decision on what to do next treatment wise after 2 weeks of discussions. We came home from Boston ready for change, and then after talking to Dr. Abromowitch here in Omaha we were really considering giving the Carboplatin and Vincristine another shot. We just didn’t want to give up on a viable drug too soon, but after a lot of praying, thinking, and talking we decided to be proactive and make a change before we waited to long. We decided to go with a plan of using drugs called Avastin and Irinotecan every other week for over a year. This does mean that we start our timeline all over again but it we are counting on it being more effective in stopping the growth of Emma’s tumor. We actually had our first dose of the new drugs last Tuesday and it seemed to go fairly well. We will keep praying for positive results from our new plan.
On monday morning Emma woke up with a 101.8 temperature so Emma, Gina (one of Emma’s babysitters), and I made our way up to the emergency room. They did almost every test imaginable, blood from two places, x-ray, and urine, to ensure that she is doing ok. All of the initial tests came back ok so they gave her a dose of Rocephin and sent us home. The temperature hung around all night so Emma, Haley (Emma’s babysitter), and Kathryn headed back up to Children’s on Tuesday morning for a second dose of Rocephin to protect her from any possible bacterial infections she may have. The blood tests came back as negative and Emma’s temperature was gone most of the evening on Tuesday. We woke up to Emma crying on Wednesday morning around 3:30 a.m. and we were not pleased to see that she had a 102.4 temperature. After a call to Children’s it was decided that we would wait till morning to come in and be looked at. This way we could avoid the ER visit. Emma and I went up to the clinic around 8 a.m. and around 10:30 we were told she was going to be admitted because she was neutropenic. Her Neut# had been around 2,000 for the most part and yesterday it was down to 220.
Emma was admitted and the continued to do a smattering of tests to find out what exactly was causing her blood count to drop so quickly from Monday to Wednesday. They administered another blood draw out of her arm, an overall inspection of her, and a nasal smear to check for viruses. I think the nasal test was her least favorite as I can understand. I am pretty sure they shoved it in far enough to be digging out of her brain. This test did show by that evening that she was suffering from a virus called Human Parainfluenza Virus – 4. While we don’t want her to have it, this is a much better option than a bacterial infection that they were worried it could be.
Thursday we woke up to find out that her white blood cells and Nuet# had dropped again from 220 to 10. This told us that she was going to be staying longer, shucks. She has been very sleepy for the past couple days probably working to get over the virus that we had found out about. Overall she has been fairly happy and eaten ok, so we are just waiting for her to feel better and get back to her best. The afternoon was a little worrisome as Emma’s temperature dropped to 94 for around an hour and her entire body turned blue. It was a little disturbing when three nurses and two doctors didn’t know what was going on. The doctors also informed us that one of her blood draws came back as positive for a staph infection. He did inform us that of all bacteria’s to find staph infections come back as false positives. We really didn’t want to think that staph infection was a possibility but at the same time the temperature drops and other issues told us it was a possibility.
Friday was a fairly uneventful day, thank goodness. She was tired but had stretches where she was fairly playful and happy. The doctors did tell us that blood draws from yesterday so far have been negative for any bacteria which tells us that it could in fact be a false positive on the staph infection. We were also informed that Emma’s blood counts are headed in the right direction (very slowly), other than her platelet count. We will keep praying that this continues through the weekend.
Going back a little bit this past weekend we had a wonderful opportunity to walk with the Sammy’s Superheroes Team in the Columbus Day’s Parade. It was fun to be around so many passionate people trying to raise awareness about childhood cancer. It doesn’t take you being in Columbus very long to see someone wearing a Sammy shirt. Hopefully they are only getting positive news from their tests in Chicago. Good luck Sammy and family.
Over the past couple weeks we really enjoyed getting to spend a lot of time as a family and would give about anything to go back to those last weeks of summer. Thanks to everyone that has helped us out in any way we cannot begin to thank you enough for all of your generosity. We praise God for all he provides for us and keep praying for our miracle.

All pictures above were taken by the talented and wonderful Kelsy Greisen.